I Haven’t Eaten In 4 Years | BORN DIFFERENT

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26-YEAR-OLD Celia wakes up at the same time every morning to unplug her Hickman line - a tube that runs directly into her heart. Four years ago, Celia's digestive system shut down and she has been unable to eat or drink since, so the Hickman line delivers all her food, drink and medicine directly into her bloodstream. Running the feed for 14 hours from evening to morning every day, she has the remaining 10 hours "unplugged" to go about her life. Celia was born with an ultra rare condition called Loeys-Dietz syndrome (LDS) - a genetic disorder that affects the connective tissue throughout her body. Celia described to truly how it affects her day-to-day: "It causes a lot of chronic pain, it makes me incredibly tired and also I'm incredibly susceptible to various different illnesses. Many of my organs have now either not formed properly or started shutting down." Because of the wide-ranging effects LDS has on the body, the average life expectancy for someone with the condition is 36 years - so Celia and her family have to live in the knowledge that "it could happen tomorrow, it could happen in five or six years, but it will happen out of the blue." This is not lost on Celia's dad, who also has LDS and from whom Celia inherited the condition: "I am the gift that keeps on giving, that's the problem." And while the support of her parents and her husband, James, crucially enable Celia to live her best life, only one in every 70 million people have the condition and very little is still known about it. Celia has dedicated her working life to advocacy for and on behalf of disabled people - campaigning and lobbying to ensure their rights are not forgotten - and hopes to bring more attention to super-rare conditions like LDS: "One of the reasons that they're rare is because people don't know about them. If you do meet somebody that has a rare condition... Ask questions, be insightful, be respectful and be kind." And Celia's parents could not be more proud of what she has achieved up to now: "She's amazing, she gets up every day and she gets on with it. The fact that we're sitting here talking about her is her greatest achievement."
Follow Celia: linktr.ee/celiachartresaris
Videographer: Ross Fairgrieve
Producers: Hannah Beaugeard, Tom Buckman, Georgia Embling
Editor: Hailey Wang
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[@truly-channel]

If you enjoyed this video, there's more like it on our Born Different playlist here: kzbin.info/aero/PLUkdT9ljJ1cbFTk10utsTb-RGsujT5bG4

[@kopronko]

She should try the heliotherapeutic remedyes, and she would be cured very quickly , longest time it would take her 2 be healed is about 2 weeks, but usually the patients are cured just in a few days. Pwy.

[@Maarjaanaa]

@@kopronkodid you call her and tell her.

[@jonmicknono7138]

@@kopronko are you daft..!

[@kopronko]

@@Maarjaanaa No, not yet. Wouldn't she call me ?

[@kopronko]

@@jonmicknono7138 Why ?

[@dianebryant4684]

I am 72 years old and dealing with being this age , and the pains we deal with in aging. BUT, after seeing what this young woman is dealing with at her age. I will never complain again because when I was her age, chronic illness wasn’t even a concern or thought. My heart goes out to her and I applaud her strength and determination to go on with her life. Cheers to you ❤❤

[@rainbowfranklin]

I'm sorry you're in pain, but your suffering is valid and matters too even if what she experiences is subjectivity worse than your pain. Everyone's pain matters. You matter. I love you, I wish you a happy life for however much longer it will be on this Earth.

[@dianebryant4684]

@@rainbowfranklin Rainbowfranklin, THANK YOU sweetheart, my true compassion for others sometimes outweighs what is going on with me. So again thank you for your comment ❤️🤗

[@CertifiedDyme]

Sorry you're in pain , sending you love and wishing you good health and happiness 😊

[@lexxxelskywalker6411]

I'm 43 and have my own chronic pain issues and I feel exactly the same💚

[@Peacock__]

You absolutely should complain about your pain mate. Your struggles are relative to your own existence. Someone else going through worse doesn't mean you aren't going through something.

[@GigglesDaDevil]

She handles this with such style and grace .. I wish her and her family all the best

[@Jotinko]

I’m 36 and can’t imagine the thought of my life ending out of the blue. The dad shouldn’t feel guilty. I wish her the best.

[@itsjeninMass]

I mean, realistically, it could happen to any of us at any time.

[@soserene6107]

All of our lives could end out of the blue

[@emillychen888]

I'm 36 too, and it sounded really scary and so sad when she said it.......

[@Jotinko]

@@emillychen888 You could have fooled me. You look way younger. Yes it’s scary to know that at our age (those with this horrible illness) the average life expectancy is at the present moment.

[@MariaPerezxox-vq1fx]

Yeah it's difficult

[@franciscachesca]

I LOVE that she uses the little energy that she has to changes things. To make this world a bit more inclusive for people who are sick and have dissabillities. Bless her for that.❤ I am ill and disabled and I am fighting with you from The Netherlands.

[@barnabasvanko3041]

Dank je well, go on, all the Best and Merry Christmas (to you all)!☺️🥳😇 I'm disabled as well, try to become a better-more human person. Lots of Greetings from Budapest, Hungary!😊

[@fanofthedog]

What a brave and graceful young woman. I wish her all of the joy and peace in the world. Her poor dad- you can see he would easily lay his life down for his child

[@silentnight3970]

You can see the guilt on dad's face. Very sad but her personality is everything. What a marvelous family.

[@jj-if6it]

Poor girl, not even being able to enjoy food and drink, one of life's basic pleasures. She's doing well to remain positive

[@CantonGirl1981]

This woman is a total boss. 🙋‍♀️

[@mushtiar_Engineer]

Hi

[@mushtiar_Engineer]

@@GamebatTheGamingPony how r u cute

[@addiecoelman1996]

​@@mushtiar_Engineer dude, this isn't a dating site. 😂😂😂

[@Tankatro]

lmao@@addiecoelman1996

[@mushtiar_Engineer]

@@addiecoelman1996 she is pretty I like 👍 her

[@pixpusha]

Infection is a huge risk. My heart goes out to her. I hope people around her are supportive and wear masks if they are ill, wash their hands and just remain understanding if she does't always want to go out or let folks in to her home.

[@ktsketti]

I have Loeys-Dietz, so this video is a little scary for me. I'm fortunate to have a milder case, but my sister who is 36 is starting to suffer from the more serious side effects. I wish you well and hope you can still have a long and fulfilling life. Our condition is rare, but it is also often left undiagnosed. There are likely many more of us out there that will never know until it's too late. I'm happy that I know, even if sometimes I wish I didn't.

[@esraesra6541]

I hope you and your sister is more than ok and will have a really nice life

[@ReineDeLaSeine14]

Yeah my diagnosis was EDS for over a decade until I had testing

[@ktsketti]

@ReineDeLaSeine14 They assumed we had Marfans syndrome for years until our second round of genetic testing. Sometimes when a doctor gives me a blank stare when I tell them I have Loeys-Dietz, I just say, "you know, like Mafans". More doctors seem to know about Marfans.

[@esraesra6541]

@@ktsketti never heard of those diseases, it must be hard

[@ReineDeLaSeine14]

@@ktsketti Yeah i can’t get a genetics evaluation since I moved because “We don’t see EDS patients”

[@LauraBidingCitizen]

I’m 37, I was diagnosed aged 28 with fibromyalgia & Ehlers Danlos Syndrome, & as the years have gone on, many, many complex commodities attached to those conditions. Unlike this beautiful woman, I’ve simply given up. I’m alone, it’s just my elderly father & I now, in January 2022 (on her birthday) I lost my beautiful mother who passed from a burst aortic abdominal aneurysm, the coroner was so wonderful he wrote an urgent letter to my GP wanting me to get tested for vascular EDS, it was clear, but I then found out (although I always knew) mum had EDS (since it has to come from a parent), she suffered terribly throughout her life & it was a mix of emotions her being diagnosed after her passing. However, I found out hEDS can cause aneurysms. I had absolutely no idea. Just like this woman’s lovely father said.. the gift that keeps on giving. Living with chronic debilitating pain is awful, having no one to share it with / talk to is even worse. You see.. my mum was that person. We knew one another so well we rarely had to speak, just a cuddle, a kiss, we’d snuggle on the bed (as she became bed bound when I cared for her) & watch tv, read books, or just talk. I didn’t just lose my mother, I lost my best friend and confidant. My heart goes out to her & her family. I only wish I had half as much energy to make a change in the world, or to meet someone - just a friend, who understands the world we live in. Love & blessings to her, her family & all who walk the path of chronic health every day x

[@plapperplanet5182]

❤my heart is with you, best wishes from Germany

[@jessicabundangkat3152]

She’s got a good attitude I like that she’s doing the best she can with her situation and does not let the struggles run her life.

[@ReineDeLaSeine14]

the prevalence of LDS is vastly underestimated. I was diagnosed with EDS (Ehlers-Danlos Syndrome) for 11 years until I had genetic testing that showed my variant is associated with LDS. it’s hard to find assessment for it because my family hasn’t had the extensive aneurysms many with LDS have. I have the same GI problems this woman has, and mine actually have improved…I’m not tube fed anymore.

[@Angie-fe8yd]

@ReineDeLaSeine That is wonderful!!Keep doing what you've been doing!! I hope you go from strength to strength 💪 The mind is a very powerful thing! Wishing🌠 you All The Best 🌠🙂🤗💕

[@Scintillate9]

I was thinking the same thing. I’m diagnosed with EDS and so many of us either can’t access genetic testing or doctors oddly don’t think we need it. as a result I’ve seen at least two cases of vascular EDS initially diagnosed as hypermobile. we should be getting an entire panel of genetic testing for connective tissue diseases

[@jamiejones8508]

@@Scintillate9blimey! That is a bad thing to miss!!!

[@killjoyneonashes5736]

I have EDS but can't access genetic testing, which sucks because I do have some of the symptoms of vEDS and it makes me a bit nervous. My doctors know little about it and I'm always finding out on my own that my other health issues are related to it. When I take the information to my doctors, they usually look it up and are like oh huh, that probably is why. 😅 I also recently found out that EDS can cause neurological symptoms and seizures for some people (after I was hospitalized for over a week because I started having seizures and they couldn't find anything wrong with me)

[@elsiemay2202]

If 1 in 4 people are disabled (including myself) why aren’t they more facilities out there. I completely understand how your lovely Dad feels as I too past an inherited disability onto my 2 children, although it wasn’t until they got diagnosed that I actually got my diagnosis. I feel incredibly guilty as I know actually what they’re going through. It’s awful watching them suffer, 24/7 chronic pain, organ problems, chronic fatigue, POTS, Refex Anoxic Seizures to name just a few. Daily living is a daily struggle but we do our best to get through. Thank you so much for sharing this video. You’re a true inspiration! ❤❤

[@Ebani]

Bc mental dishability is the normal now, otherwise I have no idea where you're getting such an out of proportion statistic

[@kannnbabyyy2121]

SHES EVERYTHINGGGGG!!!! Her family is soooooo beautiful and her husband is perfect for her. I love this girl and her story 💜💜💜

[@gabrieladiaz2652]

As a fellow disabled person, I am so inspired by your attitude. Finding the strength to "crack on," as you say, is often the hardest part 💜

[@RedneckWarlock]

For some reason, I find that phrase to be so cute haha

[@jaggerkate]

Wish I could give her a hug. 🥺

[@w-e-a.c..2264]

😢😩 she's strong like a mountain!

[@BJ-ek2jg]

Girl I love the way you have learnt to deal with the situation. You are an inspiration. You have made up your mind that you want to live life. There are so many people who don't have such a situation but are not grateful for how God has blessed them. You have made your spot in this world. God has chosen you to be a miracle for everyone. You have wonderful parents. That's how a life partner should be. Who stays at your side in a good or bad situation . Your entire family is an inspiration. Lots of love from me to your family for being an inspiration to me and the world.

[@itsjeninMass]

This whole family is amazing. Dad, it's not your fault! You clearly love your daughter very much. I admire the bond that this family has. This young lady is incredible, and I sincerely hope that she and her family get a few extra years to make memories!

[@kameralkutie5594]

I’m sorry, but I disagree. I have an incurable disease and would never place that on anyone. It’s very sad and selfish. I would never have kids because I don’t want them to have to suffer like myself. He feels guilty because he knew he was wrong.😢

[@kaitlinschwarz3644]

I don’t think the dad actually has it so how could he have known. That’s not being selfish if you didn’t know that it could happen.

[@itsjeninMass]

@@kaitlinschwarz3644 I think he does have it. I believe he stated that in the video.

[@kameralkutie5594]

@@kaitlinschwarz3644 Did we watch the same video?😂 The video said it’s hard for the dad to look at his daughter because he feels bad and knows his daughter is in this situation because of him. She inherited the illnesses from him.

[@frickfrack7075]

​@@kameralkutie5594 it's a genetic condition that he was unaware of him having until his daughter was diagnosed. Most people don't know if every genetic anomaly that could be passed down before they have children.

[@annastracke8585]

Life is not fair at all!! Eating- cooking- is such a fundamentally pleasurable thing that is so much part of our social life- the absence of it seems unbearably bleak for most of us. The way you cope with the enormity of your problems humbles me, good luck to you, you are quite an inspiration.

[@plan4life]

Wow! She is incredibly strong. I would have given up years ago. I think her parents should also feel proud of themselves for the way they raised her, there is clearly a lot of love and support there too.

[@tnsloek]

She’s so brave, I hope she gets to live many more years ❤️

[@PattyT.]

I believe that if one has a disease such as this that can be inherited you should make sure that you don't pass it along to an innocent child. If you want children, adopt and don't give that kind of life sentence to your own child.

[@Gothchops]

I'm also disabled with a rare illness that I passed down to my daughter. I was previously misdiagnosed and didn't know my father's medical history. I understand that look in her dad's eyes but these rare conditions are called rare for a reason. The family and husband look amazingly strong and supportive 💖 The work that she is doing for disabled people is her legacy and I just think she is inspirational! Sending so much love to the whole family xx 🥰💕💗

[@kerriewithpurpose5722]

How does she keep her house super clean with a dog around? Wow

[@Fred-zk3wv]

I definitely would find it very difficult to procreate if l know what am about to pass on to my children. I would find a partner who doesn't want children to settle down with because the thought of all that burden on my children would eat me up.

[@freakygreekymelons713]

Because you are selfless and have common sense. Most don't!

[@mokaLARE]

Definitely!

[@jaccrazy21]

True. I can understand that mind set. But, consider that this disease was not identified officially until 2005. So doctors were only able to treat the issues. Her father may have only suspected something was wrong not even knowing that it was genetic at all. Kids can be born healthy and randomly have a lung deflate from a genetic condition that was never known about. Or a perfectly healthy baby can pass from Sid’s for zero known reason. It is sadly just a part of life’s cards. Genetics are only part of it. … not the whole piece. …

[@Anne_Onymous]

I have a genetic condition that's plagued me and opted to not have kids. Just feels selfish to knowingly pass it on to another person.

[@lauren6509]

That's eugenics you know that right?

[@nongthombamloyanganba6478]

She is brave and beautiful. You deserve all the happiness in this world!

[@clintwestwood1895]

What an amazing strong positive well-spoken and graceful woman, she has a strength that astounds me. Bless her, respect and Love from Nevada U.S.A

[@Camden1313]

I so admire the courage of character of people with these ultra rare diseases. I know for a fact I would not have that strength. It actually makes me feel angry at myself for how poorly I treat my quite able body by eating crap and not exercising. It really makes you take stock and simply be grateful for the way you are, instead of complaining about the petty things that people normally complain about.

[@jsterling6805]

What your saying is normal for most young people. It starts as children because we like eat what is not so healthy. That is the time to enjoy those foods because your diet will inevitably improve with age.

[@33LB]

Celia has this condition but still lives a far more meaningful, eventful, and fulfilling life than i do...

[@DugEphresh]

What a lovely, strong , incredibly brave young woman! I am absolutely at a loss for words at how strong and loving this family is. God bless them all!

[@carolinamurtha3102]

God Bless her. I had to do TPN for a few months after some major Crohn’s complications and I hated it so much. Four years and counting, plus she handles all her care? That’s tough, I wish her all the best.

[@RelightAlopecia]

What an incredible woman, family and experience to be raising awareness of. Thank you Celia!

[@thekawaiicripple]

It’s nice to see others like me, I’ve been on TPN for 9 years myself 💕I have a different connective tissue disordered that has caused my entire digestive tract to become paralyzed lost my ability to walk use the bathroom etc. so I vomit 10-15 times a day and have for most of my life so I had to get dentures at 25, had to have my bladder removed and have a urostomy, and have had sepsis from my central line 10 times. It’s not easy but I appreciate every day and every little thing life’s too short to focus on negativity. Everyone has hardships in their life completely out of their control but the only thing in my control is how I choose to deal with it, grow from it, and learn from it ❤ I love advocating spreading awareness and helping others like myself, you can use your own pain and scars to be someone else’s sign of hope and she is doing just that and doing it amazingly! 💕🫶

[@ReineDeLaSeine14]

Oh hey Ari. I used to be friends with you on Facebook. Glad to see you’re still pushing forward.

[@Moving_Forward247]

God bless you and strengthen you to keep going!

[@larsha01]

Thank you for sharing your story ! I also have a genetic connective tissue disorder and have seen that if more people knew about them and were proactive lives could have been saved. Thank you for your advocacy work. And yes i too wouldn't have the job or friends i do if i didnt have my health issues / disabilities and as much as i wish i could live an easier life without my illness , i am still grateful for them.

[@quinn2014]

I have a friend with a similarish condition- vascular ehlers danlos syndrome and she has a lot of similar issues. She also has visceroptosis (prolapse of her GI tract)

[@itsjeninMass]

There a vascular EDS? Omg. I can't even imagine!

[@quinn2014]

@@itsjeninMass there's 13 types

[@itsjeninMass]

@@quinn2014 I had no idea! Thanks for educating me. I have a lot of friends who have it, but I don't pry, because as an also disabled person, I know that people don't always want to share, and I'm here to support other people with disabilities. (I have fibromyalgia.)

[@marymeyers4280]

I’m so sorry VEDS is very scary. My child has LDS

[@_Timinator_]

Thank you so much for sharing your story - true inspirational human being. I wish you all the best and many more happy years with your husband and family!

[@Fido-vm9zi]

She's so strong & great spirited it's unbelievable. Such a great attitude! I hope for a miracle!

[@vaktsina_schastia]

Thank so much for such an amazing story about the brave woman fighting for rights of other inclusive people. It's s great example god me to be grateful for what I have.

[@alisongadenne4112]

You are an inspiration! The grace you show under your circumstances is awe inspiring. Wishing you many more fulfilling years here on earth.

[@hannahrichards6429]

Your gracefulness I will be forever in awe of. For the people who say are saying '[Amazing/ Inspiring/ Brave], but I couldn't live think that' etc. please think about what you are saying. You have a) totally not taken the message Celia is sharing to be kind and empathic, b) what's the alternative? Seriously life is life and should be respected, celebrated and valued. You are being so disrespectful when you say those words. Celia you are a powerhouse! 👏💜

[@tiffanyphipps4812]

This woman is absolutely so inspiring. Her outlook, drive, and class is unbelievable. ❤

[@youmeteacofeee]

❤️Wishing her so much health and happiness

[@randylazer2894]

God bless this young woman, and may she be healed.

[@petitdon]

I admire her strength. I would be anxious every second of every day.

[@joshhdebolt]

I had to go a month or so without eating in the past because my throat couldn't filter after surgeries and it was hard. After a while you don't really get hungry but your mouth gets dry. I would sneak sips of water when I could. Swish in my mouth etc. I have a bunch of respect for her because of her outlook on her own situation. She is not mentally tearing herself apart or has a mindset of doom. She has embraced her situation and is helping many other disabled people in the process. Her parents positive attitudes go a long way in reality because emotions can rub off on one another. I hope she lives a long and happy life and continues to be the great she is!! Love and respect from the other side of the pond 🫂♥️

[@cindyhoomalu1566]

This is an amazing life! Thank you for bringing some awareness about this disease! This woman has so much grace and manages all of this so well! I wish her so much happiness and hope that her life is longer than they expect!!!

[@earthmagic8189]

May God completely heal her and restore her health. She seems optimistic and smiling beautifully.❤

[@celestialcircledance]

I live to eat so that would be like torture for me ..Her dad has it and he made it past 36 so I hope the same for her . I presume that her brother is still alive and would be curious to hear how it's affecting him as well .

[@telsclark]

Some conditions have different degrees and it seems this condition affects girls more then men. My friends daughter has a similar thing and both her father and brother have it her father died young she will die young and her brother is hardly affected at all.

[@celestialcircledance]

@@telsclark that's got to suck for her and God bless her attitude ♥

[@telsclark]

@@celestialcircledance yes it sucks for us all but she is amzing training as a midwife. She will make her mark on this world she makes us all proud every day.

[@stephenorkies2858]

So many well wishes to her and her family! Such a brave and inspiring person

[@SweetTooth8989]

She is incredibly strong and seems to handle her condition better than most people would and also maintain a mostly positive mindset. I can only imagine the guilt her father feels, but at least she doesn't want him to feel that. Of course, no parent would wish such a thing in their child and I'm sure he hoped she wouldn't inherit the condition and go on to live a normal life. She's inspiring to also have gotten herself so involved in trying to get disabled people more representation and awareness. She's a very strong girl for such a young age.

[@kentbrooks3227]

Celia, you are an amazing young woman. Thank you for bringing awareness to this and other rare conditions.

[@astralarchaeology5840]

I'm so happy that she found love! 💘 What a peaceful warrior she is!

[@gypsyjade7170]

First of all she is a treasure 👏🏼 but I can’t help thinking of her Mom. As a mother myself I can’t imagine a greater horror than watching your husband , daughter, and son to suffer from something you can’t understand or help with 😢.

[@MariaPerezxox-vq1fx]

Thanks for your care

[@bebeyondborders]

You have left a mark on the world, thank you for sharing your story and for everything you do 💛 until we see each other again x

[@redshift9531]

I was expecting a different type of video when I clicked but this young lady is so positive.

[@larsha01]

I know someone with LDS and this video really showed me just how different this syndrome is for everyone . My friend is someone who you could probably just look at and guess she has LDS but (to my knowledge) her organs haven't started to shut down yet so she doesn't have as much I guess medical care rn. This really shows how whether or not you can tell someone has an illness doesn't mean they are more or less sick. (Not that you should ever compare in the first place)

[@woop-dd8zn]

She is such an inspiration

[@clairewithnall2000]

This is brilliant- well done for doing this

[@darcellelittles1419]

Wow she is a shining light and may god continue to keep blessing you and your family ❤

[@martikacuentacuentos7306]

It is amazing how BRAVE you are. Never give Up! All the BEST

[@rowenachesworth5619]

What a wonderful and inspirational person you are. It was humbling to watch your video. Clearly your family are also your rock. I wish you all the best

[@LAVirgo67]

What a beautiful soul! She is living a full life in her own way. She is fortunate to have parents of means, so she is blessed.

[@JamilaColeman]

You’re such a beautiful warrior. Thank you for sharing your story ❤ keep crackin on. God loves you❤

[@HaileysHealth]

Wow. She’s so intelligent and has a really good job! What an incredible human.

[@dekotahrunninghorse9372]

What a great inspirational women !!!!! ❤with a very powerful message!!! Thank you sharing this great life changing video!!!

[@positivelastaction3957]

Please appreciate all that you have, own and are capable of. You are so free. ❤

[@Moving_Forward247]

That’s wonderful you were able to get married. Thank you for sharing your story and for being an advocate for the disabled. Yes we must learn how to support people with different needs. You are inspiring it is amazing you are doing what you do with the challenges you face. God bless you!

[@MadamHoneyB]

You are such an inspiration to women everywhere!! Every shape and size, race, gender, disorder, syndrome!! Hope in humanity can be and feel restored when I see someone like you!! You are angels on earth!! Thank you for all you do! I am very sorry that your life is difficult but through your difficulties you are saving lives just by setting the example you have chosen to set for yourself and I couldn’t be prouder or more honored to be your fellow human! Take care and never give up the fight! We are rooting for you!! 😊🎉😊🎉😊🗣️🗣️🗣️✊🏽🫶🏼✌🏽

[@pumpkinpatch5]

Brave, beautiful, strong and inspirational! She is all of these things! ❤

[@troytucker3467]

My child is only is only 16 it's so hard I appreciate you. We love you. I am a Dad my name is Troy and sending some love to you guys

[@allenkim6665]

I love the "one day" "one day", and if it does not resonate... then don't' worry, but the vibe you give is Truth, with a capital T

[@thewebdiva5903]

She’s lucky she has the means to afford the treatment. God bless her.

[@lexxxelskywalker6411]

Her Dad is the gift that keeps on giving. Their example helped empower her in how to deal with life with the grace and determination she does despite neverlyingtoherself and finding things tobe gratefulfor. They are astonishingand wonderful humans.

[@PracticalPerry]

The title of this video is very misleading. She is indeed eating, just differently due to her harrowing ordeal, disease, and at such a young age. I wish her the best. God bless this woman.

[@fiona0595]

What a brave beautiful woman she is. 💖

[@taramatheis1451]

What an inspiring young lady. I wish her all the best & I'm so happy she found love. She is truly living her best life ❤

[@luciatat4084]

She must be so incredibly strong! I wouldn’t want to live if I had to deal with that much.

[@g3ntl323]

She is very lucky that she has such an extraordinary life. Great family, beautiful house. Living the best life if it is just short. Imagine living with this condition in Africa, Asia. Where you live in a hut with no running water. Looking at this video she really is living her best life and good for her. I wish you the best.

[@ntombizesizwebonde9475]

Handling this with grace ❤❤ all the best dear

[@Maarjaanaa]

What a woman! So clever, so nice, so alive!

[@brittanyanderson3017]

So strong and beautiful!! Thinking of you!!❤❤❤❤❤❤❤❤

[@rosemarrypolack5708]

I followed a young woman on the chann called, Amy's Life, from the UK. This was very similar to her. She was very vibrant. I wish this nice woman a longer life❤❤

[@cjrsalinas7334]

I have undifferentiated connective tissue disease. It's an umbrella term for different autoimmune issues. The fatigue is unrelenting.

[@Tantemify]

i am sorry to hear. i have no right to complain about my life

[@sheilacirioni4676]

Amazing young woman ,with a gift to live lif to the fullest. God Bless you...keep going STRONG.👍🙏💞🤗

[@nreynolds75243]

When I was pregnant I had a TPN. This same hook up and food bags, I had also. I couldn't eat orally the entire 9 months and some. I had what is called hyperemesis. My daughter is now 25 years old.

[@cinnamoslut]

I didn't know TPN is a treatment option for severe hyperemesis while pregnant. How interesting. Makes sense though. That must have been a difficult experience. Nice to have a baby to look forward to though. :) Isn't medicine amazing? My mom suffered from severe nonstop menstrual bleeding due to uterine fibroids. She became terribly anemic as a result, it was awful. She had a ghostly pallor, was incredibly weak and fatigued, a miserable experience and terrifying for her and the family. Thankfully, she was able to get iron infusions while waiting for surgery to fix the problem. My mom said of the experience, 'Imagine if I'd had this problem 100 or more years ago. I would've bled to death. Isn't it amazing how many treatment options we have today?' We still have a ways to go in medicine, but, it's true that there is so much in medicine today that seems miraculous, especially when put in perspective of how things were 50, 100, and more years in the past!

[@nreynolds75243]

@@cinnamoslut Yes, the entire 9 months was horrible. I couldn't eat or drink (not even water). I was throwing up non-stop. Basically dry heaving. So I had 2 IV bags, nutrition bag (white looking liquid) and water bag (for hydration). I hooked up my own IV. I understand your mother's condition. I had fibroids as big as soft balls according to my gynecologist that did my surgery. I was bleeding the same as your mother with the same conditions attached. I had bleed so much until the doctor prescribed me these huge "horse pills" iron. My mother had to walk me into the doctors office because I was so weak. I slept on my parents couch for about 3 days before the iron pills kicked in. Also had to go and get iron infusions before surgery. Had a partial hysterectomy done. I was so relieved! The ball and chain was off!

[@lindalanish9720]

Thank you for your story.

[@gillkind4907]

What an amazing lady

[@jamisonfawkes8537]

the thing is, any one of our lives can end suddenly. the difference is, she knows it. i think in a really odd way, it’s helping her live to the fullest.

[@nononsenseBennett]

Nature can be so cruel.

[@TeresaDobney-ud7xu]

Beautiful brave and brilliant young woman x

[@laurenschenck5355]

Thank you for sharing your story you are so brave and amazing and strong and strength inspiring incredible women and course and I appreciate you so much and so beautiful inside and out and caring so sweet ❤

[@user-jf8dk5nq6o]

What a wonderfully remarkable woman! And she has a lovely family as well.❤

[@delynnmurray6826]

Someone I am very close with is looking at a potential Loeys-Dietz or Marfan diagnosis, thank you for sharing your experience. I know it isn't MY disability, I've got my own host of autoimmune issues, but it's comforting to know there are other people out there who are advocating for people like us, but more importantly, people like him.

[@mareezy]

I love this family so much, they are all the best. ❤❤❤sending them the best wishes

[@glenlilley4757]

What an awesome lady and family.

[@conniepatel6809]

What a beautiful person gentle soul

[@marylivich6058]

What a beautiful heart that your husband has. Love is unconditional 🤍 I pray that you will receive healing 🙏🏻